need some help

[jeffgordon]

when my son was 16 i tried waking him up but just his eyes were rolling and shallow breathing called the ambulance they got there went to er and eeg was given but it was fine they sent him home
2 days later the same thing happened only this time the eeg was positive and they diagnosed him as epileptic
they tried saying he has cocaine in his system but this turned out to be his barbituate sleeping pill now he has been on dilantin for 15 years and has remained seziure free on dilantin levels 2.3,
he stopped the sleeping pill the day dilantin was started

went to the epilepsy foundation last year but they refuse to give him EEG because they say there is no reason too

could he have been misdiagnosed

 

[Nakamova]

Hi jeffgordon, welcome --

A positive EEG after 2 seizures is generally considered a good basis for an epilepsy diagnosis. That said, for some folks, epilepsy can go into remission, and after 2-5 years seizure-free on meds, many neurologists will suggest trying a medication taper, particularly with Dilantin, which can affect bone and gum health. (The low Dilantin level isn't necessarily relevant -- I was seizure-free with very low Dilantin levels too, but when I tried tapering off, I did have a seizure and went back on meds).

Your son should discuss tapering off Dilantin with his neurologist. The taper should be done very slowly to minimize the chance of withdrawal side effects or seizures. Ideally, the neurologist should offer the option of an EEG either halfway through the withdrawal, or after full withdrawal to see if it is positive for epilepsy.

Best,
Nakamova

 

[jeffgordon]

well in the past he has stopped the dilantin for 6 months and was fine, If he has then originally when i was trying to wake him is this most likely when he would have them again?
And can a 16 year grow out of them he is 30 now?

 

[Nakamova]

It is possible for someone to "grow out of them" --or at least go into remission. There are no absolutes with epilepsy. The seizure patterns can change over time, so if his seizures were morning seizures once, that doesn't man that they couldn't be different if he were to have one again. Again, the best thing is to discuss this with his doctor. It sounds like a taper may be a worth trying, but it should be done with instructions from the neurologist.